Local family finally getting answers on son's blood disease 11/8/2008 11:17 PM
By RACHEL JOHNSON Staff writer
The cost of a second opinion: priceless.
After three months of searching for answers from doctors who claimed they were experienced with Langerhans Cell Histiocytosis (LCH), a rare blood disease caused by an excess of white blood cells that affects approximately 1 in 200,000 children born in the United States, the Householder family finally found some answers.
Travelling with 13-month-old Landin, Nicole and Stephen Householder and Robert and Gwen Koon spent the latter part of last week journeying to Monroe Carell Jr. Children's Hospital at Vanderbilt University in Nashville, Tenn., to see a specialist. The trip was anything but easy; however, it was worth it to the family.
"It was nice being able to talk to a doctor who didn't look at us like we were crazy," agreed Nicole and Gwen.
Nicole's persistence with doctors who continuously misdiagnosed Landin's condition is what led to the discovery of Dr. Whittock, one of only 4 specialists with LCH in the United States. "We had lost all hope in the medical staff here and once you lose faith in somebody, you don't want them to doctor on your child," said Nicole. "He is too young to tell me, 'Mommy, I hurt here.'"
En route to their Friday appointment, the Householders received a discouraging call and almost turned around to return to Aiken. Nicole recalls the phone call distinctly, "We were told Medicaid had not come through and we would have to reschedule." Nicole, knowing Landin needed to see the specialist, persisted in her quest to make sure Landin received proper medical attention.
Waking up in a hotel halfway to Nashville, Nicole began making phone calls and by mid-afternoon discovered a clerical error occurred when the paperwork was filed; she finally secured the information needed to continue the trip. "While we still won't know for another 2 more weeks if Medicaid will help pay, we were able to see the doctor," said Nicole.
The visit to the specialist not only reassured the family, it offered hope and restored confidence in the medical profession. "He started answering our questions before we could even ask," said Nicole. "And he said he wouldn't put Landin through anything he didn't think was necessary."
The visit revealed issues with previous treatments: overlooked symptoms, inclusive exrays, misread test results and important tests which were never conducted. While the official results are still not back from the specialist, at least a clear plan of action is in place.
If Landin's test results show Gastrointestinal (GI) involvement, he will immediately start chemotherapy treatments. If results do not show GI involvement, he will return to Nashville and be admitted for additional testing to include endoscope, colonoscopy and possible exploratory surgery. One of the concerns is Diabetes Insipidus, a disease associated with the loss of control of water balance through a deficiency or lack of a hormone, vasopressin, secreted by the pituitary gland.
"The doctor explained this disease (LCH) is just so weird, the intestines may not look swollen and there may not be blood but they could be affected. They told us the GI tract is very hard to diagnose but the bowl problems Landin has had since birth are a warning sign," said Nicole.
The best possible news the Householders can anticipate in the coming days is a report stating LCH is only on Landin's skin and is not attacking multi-systems. If this is the case, he will undergo topical oil chemo treatment and potentially chemo therapy.
"You never know, this month it could affect just his skin and next month, it could be everywhere. We will have to watch him very close for the next few years," said Nicole. "I just want people to know; it is sad the stuff we've had to go through because nobody knows about LCH. It is frustrating as a mom and there are probably kids out there who have LCH and their parents don't know something is inside eating them up."
Landin's Papa summed it up best when he said, "It didn't matter how far we had to drive to get a doctor like that; it was worth it."
The family continues to believe in Landin's Miracle. "I believe Jesus Christ will heal him, actually I don't believe, I know," said Stephen as he pulled Landin into his arms and kissed his forehead.
The entire family is grateful to everyone who has been keeping them in their thoughts and prayers. Anyone interested in learning more about the disease or offering their prayers and support may contact the family at landinsmiracle@hotmail.com. A website has been established at www.caringbridge.org/visit/landinsmiracle and extensive information about LCH may be found at www.histio.org. For those who wish to remain anonymous, an account has been set up at Regions Bank in the name of Landin or Nicole Householder. The family may also be reached at P.O. Box 1592, Aiken, S.C. 29802.
"Any money donated to Landin, not used to help pay travel expenses and medical bills will be donated to histiocytosis research," said Nicole.
The family will start gift wrapping presents at the Aiken Mall, the day after Thanksgiving and each consecutive Saturday until Christmas. Additionally, plans are underway to hold a walk in order to raise money for research as "this illness is so rare, there is little research into its cause and treatment, and it is often referred to as an 'orphan disease,' meaning it strikes too few people to generate government-supported research," reports www.histio.org.
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Comment Title: My boy is just identified as a LCH baby
Sorry about your baby. Just few days ago, it is identified that 2 pieces bones of my babyboys vertebral column were attacked by LCH disease and are now flat on the front side due to the gravity. Now, he is under treatment in Hong Kong Queen Mary hospital. We pray and hope he will become better soon. What do you mean, Nicole, with "always be a baby/toddler with LCH"? What would be the long-term effect? Thank you.
Posted by: looking for a doctor On: 11/10/2008
Comment Title: Doctor who
I'd like to know who the doctors in aiken were that couldn't diagnose this child. guess that is why they call it practicing medicine.
Posted by: Nofrills On: 11/9/2008
Comment Title: all prays are with you
I know Mr. Robert Koon and he is a decent hard working american who loves life and really loves his family. I know he will move mountains if he has to when it comes to his family. I would like him and his family to know that my family have been and will continue to pray for Landin. I ask all painters in Aiken or Augusta to donate just the cost of one six pack or the cost of a lunch to help this child. May god bless them and the angels protect Landin
Posted by: Nicole Householder On: 11/9/2008
Comment Title: Thanks you Rachel
Thank you Rachel for helping us with Landins stories!! I thank God that he allowed our paths to cross. LCH is a disease that changes your life forever, Landin will no longer be a normal baby/toddler he'll always be a baby/toddler with LCH. Keep praying for his Miracle
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